After thirteen days of relief, the low-dose naltrexone seems to no longer be working. On Friday afternoon, I felt the subtle return of that all-too-familiar fatigue, debilitating muscle pain, digestive issues, brain fog and moodiness. By Sunday evening, my magical carriage had transformed back into a pumpkin. After two days of immense struggling and far too many naps, I realized the symptoms probably weren’t due to grabbing lunch with my coworkers or fighting off an oncoming cold. My sincerest apologies go out to the black bean burger and my boss’ sick kid who I originally blamed for this fiasco.

At night, I’ve been living in a twilight between sleep and wakefulness where I’m assaulted with vivid and violent dreams, involving murder, rape, armed robberies and natural disasters. I would liken it to lucid dreaming, but in which free will is merely an illusion. I come out of the dreams with my head spinning–all day, I feel that nausea that comes the moment you step off a roller coaster as your body works to reestablish equilibrium. I fall back into bed early, as the dizziness ends and the nightmares begin once more.

The LDN felt too good to be true from Day 1, but I’m hoping that a dosage adjustment will send it right back into that category. As much as I’d prefer to avoid pharmaceuticals, I don’t need to understand the mechanism behind those twelve days of relief to desperately wish for them back. I spent nearly two weeks standing atop a grassy cliff, overlooking the crashing waves as the salty breezes brushed up along my check–it was heaven. And then I fell off the cliff and now lay splayed upon the jagged rocks below.

I’m planning to call my compounding pharmacist today to figure out what might be going on. I’ve always been highly sensitive to medication, so I’m hoping that stepping back to 3mg or 1.5mg will restore the positive benefits while eliminating the bad. The first thirteen days of LDN were the absolute best days I’ve had in over four years–I was clear, strong and felt capable of anything. For a brief time, I felt like myself again, and I would pay any amount of money to restore that feeling.

I’m devastated, desperate and hopeful, all wrapped into one big, overwhelming emotion. It worked like a charm, and then it didn’t. I can’t wrap my head around it.

Has anyone reading ever used low-dose naltrexone for autoimmune disease, chronic fatigue syndrome or chronic pain? If so, did it do anything to alleviate your symptoms? Did you have any challenges with finding the correct dosage or experience only temporary relief?

I’m hoping this is a case of “three steps forward, one step back” and that in the grand scheme of things, these challenging few days will be a small blip on my path to recovery.

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3 thoughts on “Not-So-Lucky Thirteen”

I have done several trials of LDN and am currently attempting it again. I have an autoimmune disorder. When I begin I can only tolerate .25 mg. I have to go up really slowly, ie .25 mg daily for a month. I haven’t been able to get to a dose yet that gives me benefits but I have a lot of things going on with my body. It seems that since you got a benefit right away from the lower dose that this could be a successful med for you. Hope it works out for you.

I hope that LDN, or whatever other treatments you explore, bring you relief and some newfound hope. While I don’t yet have a definitive diagnosis, numerous results are pointing towards autoimmune disorder…and it sounds like a challenging path, at best. Sending positive thoughts and a big hug your way, friend. ❤